“A clinical trial is its own hero’s journey. People give up something to possibly get something in return. They are coming to terms with changes in their own lives and have set out to find a new beginning.”
These powerful words are the sentiment of artist John Magnan, who is creating three large wooden sculptures to honor participants in clinical research. The sculptures are being built collectively by the clinical research community: patients, their family and friends, medical teams, caregivers and researchers. People are invited to personalize a wooden brick with their thoughts and feelings about research and send it in to John, who then incorporates it into the larger sculpture. This work is being sponsored by Lilly as part of our efforts to support people sharing their stories and experiences in clinical trials. We call it Hero’s Journey Art.
Sharing the Human Experience
Writer and mythologist Joseph Campbell explored the human experience and coined the term “hero’s journey” to describe the classical narrative pattern of a central character who travels on an adventure, overcomes a major obstacle or hardship and returns home changed in some way.
People who participate in clinical research embark on their own hero’s journey, unsure what the road ahead may hold when they decide to take part in a study. The vast majority of them have a good experience—good enough that they would participate in another research study if given the chance (see number 10 on this list of “things to know” about clinical trials).
Every year, some 2 million people complete their participation in all sorts of research, part of their own hero's journey to seek wellness and contribute to science. Yet there is very little acknowledgement of that vast contribution, no shred of evidence that it was indeed a collection of people who brought new medicines and knowledge to the world.
That brings to mind a metaphor for the sculptures. We are not isolated in research. We are not just individual bricks. We are a collective body, each contributing our part--our voice--to the larger goal. This crowd-sourced art project seeks to honor that contribution, for all to see.
Liza Bernstein, an artist who is also a MedX ePatient scholar with expertise in patient-centered design and health care social media, may have said it best when she heard about the idea for the project early-on: "We need the industry to listen to patients and interact with us as equal collaborators and partners. When we are able to collaborate and listen to each other, it feels rare and special. That’s how I feel about The Hero’s Journey.”